The diagnostic pathway for patients with interstitial lung disease: a mixed-methods study of patients and physicians.

OBJECTIVES: The diagnostic process for patients with interstitial lung diseases (ILD) remains complex. The aim of this study was to characterise the diagnostic care pathway and identify barriers and potential solutions to access a timely and accurate ILD diagnosis. DESIGN: This mixed-method study was comprised of a quantitative chart review, patient and physician surveys and focus groups. RESULTS: Chart review was completed for 97 patients. Median time from symptom onset to ILD diagnosis was 12.0 (IQR 20.5) months, with 46% diagnosed within 1 year. Time from first computed tomography (CT) scan to respirology referral was 2.4 (IQR 21.2) months. Referrals with a prior CT were triaged sooner than referrals without (1.7±1.6 months vs 3.9±3.3 months, p=0.013, 95% CI 0.48 to 2.94). On patient surveys (n=70), 51% felt that their lung disease was not recognised early enough. Commonly reported challenges to timely diagnosis included delayed presentation to primary care, initial misdiagnoses and long wait-times for specialists. Forty-five per cent of physicians (n=20) identified diagnostic delays, attributed to delayed presentations to primary care (58%), initial misdiagnoses (67%) and delayed chest imaging (75%). Themes from patient and respirologist focus groups included patient-related, healthcare provider-related and system-related factors leading to delays in diagnosis. CONCLUSIONS: This mixed-methods study identified patient and system-related factors that contribute to diagnostic delays for patients with ILD, with most delays occurring prior to respirology referral. ILD awareness and education, earlier presentation to primary care, expedited access to chest imaging and earlier referral to respirology may expedite diagnosis.

Optimizing the integration of family caregivers in the delivery of person-centered care: evaluation of an educational program for the healthcare workforce.

BACKGROUND: While family caregivers provide 70-90% of care for people living in the community and assist with 10-30% of the care in congregate living, most healthcare providers do not meaningfully involve family caregivers as partners in care. Recent research recommends that the healthcare workforce receive competency-based education to identify, assess, support, and partner with family caregivers across the care trajectory. OBJECTIVE: This paper reports a mixed-methods evaluation of a person-centered competency-based education program on Caregiver-Centered Care for the healthcare workforce. METHODS: This foundational education was designed for all healthcare providers and trainees who work with family caregivers and is offered free online (caregivercare.ca). Healthcare providers from five healthcare settings (primary, acute, home, supportive living, long-term care) and trainees in medicine, nursing, and allied health were recruited via email and social media. We used the Kirkpatrick-Barr health workforce training evaluation framework to evaluate the education program, measuring various healthcare providers' learner satisfaction with the content (Level 1), pre-post changes in knowledge and confidence when working with family caregivers (Level 2), and changes in behaviors in practice (Level 3). RESULTS: Participants were primarily healthcare employees (68.9%) and trainees (21.7%) and represented 5 healthcare settings. Evaluation of the first 161 learners completing the program indicated that on a 5-point Likert scale, the majority were satisfied with the overall quality of the education (Mean(M) = 4.69; SD = .60). Paired T-tests indicated that out of a score of 50, post-education changes in knowledge and confidence to work with family caregivers was significantly higher than pre-education scores (pre M = 38.90, SD = 6.90; post M = 46.60, SD = 4.10; t(150) = - 16.75, p < .0001). Qualitative results derived from open responses echoed the quantitative findings in satisfaction with the education delivery as well as improvements in learners' knowledge and confidence. CONCLUSION: Health workforce education to provide person-centered care to all family caregivers is an innovative approach to addressing the current inconsistent system of supports for family caregivers. The education program evaluated here was effective at increasing self-reported knowledge and confidence to work with family caregivers.

Advance Care Planning Needs in Idiopathic Pulmonary Fibrosis: A Qualitative Study.

INTRODUCTION: Advance care planning is recommended in chronic respiratory diseases, including Idiopathic Pulmonary Fibrosis. In practice, uptake remains low due to patient, physician and system-related factors, including lack of time, training and guidance on timing, components and content of conversations. Our aim was to explore perspectives, experiences and needs to inform a framework. METHODS: We conducted a qualitative study in western Canada, using semi-structured interviews and inductive analysis. Patient, caregiver and health care professional participants described advance care planning experiences with Idiopathic Pulmonary Fibrosis. RESULTS: Twenty participants were interviewed individually: 5 patients, 5 caregivers, 5 home care and 5 acute care health care professionals. Two categories, perceptions and recommendations, were identified with themes and subthemes. Participant perceptions were insufficient information and conversations occur late. Recommendations were: have earlier conversations; have open conversations; provide detailed information; and plan for end-of-life. Patients and caregivers wanted honesty, openness and clarity. Professionals related delayed timing to poor end-of-life care and distressing deaths. Home care professionals described comfort with and an engaged approach to advance care planning. Acute care professionals perceived lack of clarity of roles and described personal, patient and caregiver distress. INTERPRETATION: Analysis of diverse experiences provided further understanding of advance care planning in Idiopathic Pulmonary Fibrosis. Advance care planning is desired by patients and caregivers early in their illness experience. Health care professionals described a need to clarify role, scope and responsibility. Practical guidance and training must be available to care providers to improve competency and confidence in these conversations.

Person-centered care for family caregivers of people living with dementia: Co-designing an education program for the healthcare workforce.

BACKGROUND: Recent research recommends the healthcare workforce receive competency-based education to identify, assess, support and partner with family-caregivers [FCGs} across the care trajectory.[1 2] Although the risk of FCG anxiety, burden, and loneliness to FCG's wellbeing is widely documented, typically education has been targeted towards FCG's to increase their care skills rather to educate healthcare providers to support FCG's caregiving and wellbeing.[3] OBJECTIVES: We will present the co-design process used to create a competency-based education program for the healthcare workforce that ensures a person-centered focus on FCGs and introduce our Health Workforce Caregiver-Centered Care Education focused on dementia. Co-design is the act of creating with stakeholders to ensure the results meet their needs and are usable. PROJECT DESCRIPTION: We began by coining the concept "caregiver-centered care," defining it as: a collaborative working relationship between families and healthcare providers aimed at supporting FCGs in their caregiving role, decisions about services, care management, and advocacy [4 5] . From this definition, and working with multi-level interdisciplinary stakeholders we designed[6] and validated[7] a Caregiver-Centered Care Competency Framework in a Modified Delphi Process. Stakeholders (n= 101) including FCGs, health providers, policy makers, community organizations, research team, script writer, and educational designers then used effective practices for dementia education for the health workforce [8-11] to co-design the first or 'foundational' level of a Caregiver Centered Care education program. RESULTS: Teaching and learning resources include six competency-aligned educational modules with videos and interactive exercises that encourage reflection. With the COVID-19 pandemic, we moved the education online (caregivercare.ca). In the first two months online, November 9, 2020-January 9, 2021, 352 healthcare providers completed the education. To date, learners' qualitative evaluations have been positive, "Very good information for professionals working with caregivers; especially relevant to homecare, geriatricians, allied health, and others working within the Seniors' Health realm. Engaging format that really evokes empathy for caregivers." DISCUSSION: We continue to use mixed methods to evaluate the Caregiver-Centered Care Education, for acceptability and effectiveness, in five care contexts (primary, acute, home, supportive living, long-term care). CONCLUSION: We expect that our education will support caregiver-centered care in all settings providing dementia-related care.

Action plans in idiopathic pulmonary fibrosis: a qualitative study-'I do what I can do'.

BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable fibrotic lung disease in which patients and caregivers report a high symptom burden. Symptoms are often poorly managed and patients and caregivers struggle to alleviate their distress in the absence of self-management support. AIM: To explore perceptions of symptoms, symptom management strategies and self-efficacy for patients with IPF and caregivers who received self-management education and action plans created and provided in a Multidisciplinary Collaborative Interstitial Lung Disease (MDC-ILD) Clinic. DESIGN: A qualitative study was conducted with participants recruited from the MDC-ILD Clinic. Participants received an early integrated palliative approach; most attended ILD pulmonary rehabilitation and some received home care support. Semistructured interviews were conducted. Patient participants completed Measure Yourself Medical Outcome Profile (MYMOP) for symptom assessment and Chronic Obstructive Pulmonary Disease Self-Efficacy Scale to assess self-management efficacy. RESULTS: Thirteen patients and eight self-declared caregiver participants were interviewed. IPF severity ranged from mild to advanced disease. Participants integrated and personalised self-management strategies. They were intentional and confident, focused on living well and engaged in anticipatory planning. Twelve participants completed the MYMOP. Five reported dyspnoea. Four reported fatigue as an additional or only symptom. One reported cough. Five declared no dyspnoea, cough or fatigue. Participants reported 80% self-efficacy in symptom management. CONCLUSIONS: The approach to symptom self-management and education was beneficial to patients with IPF and caregiver participants. Participants personalised the strategies, focusing on living, and planned both in the moment and for the future. They were confident and expressed dignity and meaning in their lives.

Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences.

BACKGROUND: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. AIM: The purpose of this study was to explore bereaved caregivers' experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. DESIGN: A narrative approach was used, with thematic and content analysis of open-ended interviews. SETTING/PARTICIPANTS: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. RESULTS: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients' goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients' symptoms or strain of relationships. CONCLUSION: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.

Innovative Urgent Care for the Palliative Patient at Home.

Palliative and end-of-life patients in their homes are at risk of developing symptom crises requiring urgent care. The usual care for these patients involves transport to an Emergency Department (ED) despite the preference of most palliative patients to stay home. The objective of this initiative was to develop an innovative strategy to provide collaborative care in the home to alleviate symptoms and avoid transport. A partnership was created among Emergency Medical Services and Community Care staff, physicians, and leaders to enable patients to stay at home with existing resources during symptom crisis. As a result of the initiative, patients were able to stay at home more frequently. When patients required transport to the ED, it occurred after attempted symptom management in the home. A total of 110 calls were tracked in the first 18 months of the initiative. Of those, 61% ended with the patient staying home, in alignment with their preferred place of care at the end of life. A collaborative approach by care providers in the community enabled patients to stay home despite symptom crisis near the end of life.

The Safety of Hospital Beds: Ingress, Egress, and In-Bed Mobility.

To explore the safety of the standard and the low hospital bed, we report on a microanalysis of 15 patients' ability to ingress, move about the bed, and egress. The 15 participants were purposefully selected with various disabilities. Bed conditions were randomized with side rails up or down and one low bed with side rails down. We explored the patients' use of the side rails, bed height, ability to lift their legs onto the mattress, and ability to turn, egress, and walk back to the chair. The standard bed was too high for some participants, both for ingress and egress. Side rails were used by most participants when entering, turning in bed, and exiting. We recommend that side rails be reconsidered as a means to facilitate in-bed movement, ingress, and egress. Furthermore, single deck height settings for all patients are not optimal. Low beds as a safety measure must be re-evaluated.

Awaiting diagnosis of breast cancer: strategies of enduring for preserving self.

PURPOSE/OBJECTIVES: To explicate the emotional experiences of women undergoing breast cancer diagnosis who are waiting for the results of breast biopsy. RESEARCH APPROACH: Glaserian Grounded Theory. SETTING: Urban area in western Canada. PARTICIPANTS: 37 women aged 32-76 years. The breast cancer diagnosis was positive for 11 women, negative for 24 women, and two results were unclear. METHODOLOGIC APPROACH: Unstructured, recorded telephone interviews. FINDINGS: Undergoing breast cancer diagnosis is a profoundly distressing experience dictated by diagnostic processes and procedures. Women rapidly transitioned from wellness to frightening phases of facing cancer to continuing terror during the testing phase. While waiting to hear results, women controlled their emotions, which enabled them to get through the experience and highlighted the protective function of enduring and its necessity for survival. The basic social psychological process, preserving self, is the outcome of enduring. CONCLUSIONS: A mid-range theory, Awaiting Diagnosis: Enduring for Preserving Self, was developed. This theory explicates the emotional responses of women who were undergoing diagnosis for breast cancer and provides a theoretical behavioral basis for responding to cues and signals of suffering. INTERPRETATION: The Praxis Theory of Suffering enables nurses to recognize and respond according to the behaviors of suffering, and to endure with healthy, adaptive, and normalizing behaviors that enable preserving self.

Living With Chronic Lower Pulmonary Disease: Disruptions of the Embodied Phenomenological Self.

In this article, I present a phenomenological study of individuals' experiences of living with moderate to very severe chronic lower pulmonary disease (chronic obstructive pulmonary disease, asthma, or both). Phenomenology is a philosophy, distinct from descriptive or thematic research, which is useful as a foundation for scientific inquiry. In this study, I used the lens of Merleau-Ponty to understand and interpret participants' experiences of living with pulmonary disease, and the approach of van Manen for analysis. I conclude that in chronic pulmonary disease, awareness of breathing and the body is experienced in the sounds, sensations, and signals of breathing and the body, and in the experiences of the body-in-the-world. Central themes of being-in-the-world from the study describe the disruption of the embodied phenomenological self: Participants experienced slowing down, doing less, and having to stop due to shortness of breath. Both chronic and acute dyspnea were prevalent and the taken-for-granted aspects of daily activities were disrupted. Findings of this study have implications for public and patient education, and opportunities for integration of experiential aspects within nursing education and practice.

Knowledge and skill acquisition for critical care nursing practice.

In many critical care units, extended orientation or education programs have been offered to prepare the registered nurse to work in this specialty area. Current shortages of nurses and less experienced nurses applying for critical care positions have augmented the need for educational programs. In the Edmonton region, a partnership between two public institutions led to the development and implementation of an innovative educational program. In this article, we describe challenges and strategies to prepare critical care nurses to integrate knowledge, and meet the standards and expectations of both partners. In particular, methods are described to achieve theoretical and clinical outcomes. This article contributes to the discussion and implementation to offer knowledge and skill acquisition for a novice critical care nurse.

Patient-family-nurse interactions in the trauma-resuscitation room.

BACKGROUND: Controversy about the presence of patients' family members in the emergency department has centered on the trauma-resuscitation room. Little is known about interactions of patients' family members with the patients and with nurses or about the ramifications of the presence of patients' family members at the bedside. OBJECTIVES: To describe behavioral responses offamily members of patients and the interactions of thefamily members with nurses and the patient in the trauma room. METHODS: A secondary analysis was done of 193 videotapes of trauma room care. Of these, 88 tapes showed the presence of patients' family members, for a total of 42 hours. Qualitative ethology and a model of suffering as a scaffold were used to analyze verbal and nonverbal interactions between nurses, patients' family members, and patients. Behaviors and verbal interactions of patients and their families were coded as to persons who were enduring and persons who were emotionally suffering. Categories were described. RESULTS: Whether a patient's family members entered the trauma room depended on the patients condition, the patient's behavioral state, and the nature of the treatments. Categories of interactions were families learning to endure, patients failing to endure, family emotionally suffering and patient enduring, patient and family enduring, and resolution of enduring. The interaction style of the nurses involved was particular to each of these states. Two instances of inappropriate interactions occurred. CONCLUSIONS: Nurses can use the Model of Suffering as a framework to assess behavioral and emotional states and to select appropriate strategies to comfort patients' family members.